In the last 3 weeks, I’ve had 2 friends pass away tragically. In one case, my friend is actually the widow, and in the other, my friend and I were once in a small group together. Both are very dear to me. Not because we were best buddies and told each other our deepest secrets. Not even that we went out for brunches or coffee. No regular text messages or emails were ever sent between us. I love them because during the time we spent together, they both made an impression on me of love, positivity, humor, and beauty. Not just in general, but like it was for me.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” –Maya Angelou

That imprint on my heart they made is why I find myself mourning so much, especially for their families. Out of respect for their families, this article is not about them, but about the lesson I found about dealing with grief.

Grief stinks.

“Grief is a journey, often perilous and without clear direction. The experience of grieving cannot be ordered or categorized, hurried or controlled, pushed aside or ignored indefinitely. It is inevitable as breathing, as change, as love. It may be postponed, but it will not be denied.” Fumia, Molly. (2003) Safe Passages.

I’ve been fortunate to still have my immediate family here on Earth. Yes, I’ve had family members and like-family members pass away. I can remember the heartache at the time that it happened. But now my memories of them are of joy and happiness I shared with them while they were alive. I have completed my grieving process and enough time has passed that it no longer negatively affects the quality of my life.

Last night, immediately after the memorial service I became extremely overwhelmed. Not only for the obvious reasons, but I had been “relocated” back in time to a place in my life where “normal” was nowhere close to what my new normal has become since then. I was in a building and surrounded by people and memories of that past life that, comparatively, was much simpler, more flexible, more prosperous, and made me more available to be of service to others. I was reminded of the personal struggle of being on the fence of deciding to leave a life I wanted to keep but couldn’t have my cake and eat it too.

It was at the end of the service when the “losses” that I have had to face since then all came rushing back to me. Right there. In the most inappropriate place to be thinking about yourself.

**It is important to note that this is NOT location-specific or person-specific, but refers to a specific time in my life when I was dealing with these emotions. No hate mail please. lol

I found myself feeling like a stranger, an outsider watching people mourn and comforting each other. I didn’t know what to do. It was like I didn’t belong. **
Like I didn’t deserve to be there, to be among the hurting, to be hurting.

I became dizzy with feelings I have already once mourned – the rejection, the isolation, the loss of friendships, the loss of trust, the judgment of being a bad parent despite the constant effort I put into it, the judgment that my child has special needs despite his high IQ, that my child is not accepted, that his sibling is not accepted, no birthday party invitations, no one coming to birthday parties, the loss of social engagements and adult interactions, the loss of freedom, the lack of support, the lack of help, the lack of time/money to hire enough help, the ten-fold increase of responsibility, the finality that it really is all up to me and accepting that this is not going to go away, the loss of simplicity, the fact that “Catch 22″ is the way of life, that even the best of friends don’t know how to help so they don’t, that even the best of friends think they know how to help so they do- but they don’t, the loss of confidence, self-esteem, and ultimately mourning the feeling that I had to hide all of these emotions and fears because of the feeling that no one would understand, no one would care, no one should have to endure my drama, and I didn’t want to be pitied.

Why was this happening right now? I’ve been through this already. I’ve forgiven myself, I’ve forgiven people. And fortunately, I have a failing memory so I’m pretty good at the forgetting part too. I know it had to be evident on my face, but I also knew that I was the only one focused on me.

I, like many others with children/spouse on the autism spectrum, know this process of mourning, especially the first 5 stages, oh-too-well. It often presents itself as a CYCLE. Not necessarily because of an avoidance of accepting the deck of cards I got or of developing realistic expectations (though sometimes it is!), but because sometimes new things present themselves – things I maybe didn’t know that I was unrealistic, or things where I wasn’t quite realistic enough – that can blindside me and send me all the way back to square Shock.Other times, it might be a former issue that I thought was long gone that rears it’s ugly head again, or a y response that I could go to the bank on getting every single time I presented an x stimulus goes haywire, leaving me looking and feeling like an idiot or liar or both. (Although admittedly, sometimes that unpredictable ‘if x, then y’ outcome is favorable and provokes a different kind of shock!) Because of the constant unpredictability of extreme behaviors and the lack of communication skills, this cycle gets set off daily, and often. A meltdown doesn’t even have to ensue. But the constant effort of preventing a meltdown, or the constant reminder to stop taking literal comments personally, fuels the roller coaster’s engine. I feel like a mouse in its wheel running so hard, but getting nowhere. I dismount, just to remount on the same wheel in the same place and run again.

At the peak of “This Stinks” mode, I hear the voice of our family counselor repeating in my ear “this is the life you’re signed up for and you can’t get stuck here. You have 2 kids that are depending on you. It’s time to move forward.” Cheap shot for motivating me…but sometimes perspective is all I need and I’ve heard her say it enough that I don’t have to call her to hear it anymore (though sometimes I forget and I still call her and then she says it again and I’m like, shoot, I knew that already! Never mind, carry on, have a nice day). Over time, this grief cycle may not necessarily approach zero, but I can see the circle shrinking, stages being skipped, and soon I’ll learn to zip around the bend quicker with each new shock that comes along. I’ve already mastered with the whole peeing on the floor thing…once I learn it has happened, I can go from Zero to Acceptance in less than 30 seconds! There’s no shock or denial, anger and bargaining is more from the owners or cleaners of the floor, depression looks more like embarrassment for whomever had to witness it.

As I sat in the parking lot after a good weep and a prayer, I took a moment to acknowledge and thank my friend in Heaven. Then I collected myself and made another list of what I’ve gained and have been able to overcome, parenting skills I’ve developed, learning to appreciate the smallest of milestones, massive spiritual growth, appreciating and loving people – all people – the way God loves me, the gift of amazing teachers and therapists leading to marked improvements in The Elder’s development, and all the many blessings I have received on this side of the fence where who cares if the grass isn’t greener….I’ve got the whole spectrum!

I’d commented that I found this post to be incredibly insightful and I think you’re very brave to share it. Brave and generous. I’ve learned so much from your writings through the years…know that I’m always cheering you on. Hugs from Denver…and thanks, K.

I lost one of my best friends last year. For the first time in my life I learned the meaning of bitter sweet. I’m still in the grief cycle w/ my son as well. I think “consider it pure joy” has a lot to do with knowing God uses these things to grow us, to strengthen us, to make us dependent on Him, and to make us more like Him. xoxo